History

Wednesday, June 23, 2004 7:44 PM CDT

Dr. Yim was correct - Benton slipped further into a coma. He waited for many dear family and friends to see him. On Tuesday evening, his breathing slowed so that we thought he was gone. But his heart beat strongly for two more hours - he had such a brave heart. He was surrounded by his dear sister, Grandma Betty, Aunt Val, good friend Weeba (Debbie), cousin Heather and mommy and daddy. He had a smile on his face.
We will have a celebration of his life on Monday, June 28 at 11:00 a.m. at St. Clare’s Catholic Church on 1950 Junction Blvd. in Roseville. Food will be provided after at the church hall We would like a few people to very briefly share their memories of Benton at or after the service. Please let us know if you are interested.
We thank you for your support and prayers for our dear angel Benton. He will be sorely missed!!

Monday, June 21, 2004 7:34 PM CDT

Benton has slipped into a semi-coma. Dr. Yim said that he is giving us his last and best gift - he will pass quickly and peacefully. Dr. Yim said that Benton has always been such a good boy - and he doesn't know the half of great things about Benton.
Please pray for Benton's soul. Thank you all for your support. God Bless you!!

Sunday, June 13, 2004 6:31 PM CDT

Benton seems weaker to us - sleeping more and has no desire to travel (but still loves visitors). He forgets words and has some trouble speaking, but he is unaware of any problems. He is so easy going and happy. Bob and I pray that the tumor has stopped growing - no child should have to go through this. We pray for all the children and families going through cancer treatments.
Thank you, thank you, thank you to Cousin Dick for the generous check for Benton - what a blessing!! Thanks to Katie, Del, Mitchell, Grandma and Grandpa Regello, Aunt Vicki, and Aunt Val for fun visits. Thank you to Shawna for playing with Benton while I had to go to my work. Thank you Valeska and Diana for massages and for Karen at Make-A-Wish for her kind phone calls. May God Bless you!

Wednesday, June 9, 2004 4:48 PM CDT

Benton had fun at Disneyland. He enjoyed the plane trip and the rides. He especially loved being with Becky and seeing Grandma and Grandpa Raiser. Benton has very little stamina - a year ago, right after radiation, he went on 29 rides with the Schellengers. This year he only had the strength for 10 easy rides. Also, Disneyland no longer accommodates children with disabilities and on cancer treatment through the exit area, making the trip more difficult for him
We went to the oncologist yesterday and started Iressa, the new chemo agent. Benton takes Iressa at home. It is a pill that we dissolve and then put through his g-tube. We have also started giving Benton a liquid available over the Internet called Protocell. The oncologist also had us increase Benton's steriod (Decadron).
Thank you to Aunt Val and cousin Heather for mowing our lawn - it was so nice to come home to! Thanks to Debbie for coming with us to Dr. Yim’s office. Thank you to Katie, Kathy and Grandma and Grandpa Raiser for giving Benton some Disneyland shopping money. He loved it. Thank you to those of you that continue to pray for Benton! May God Bless you all!

Friday, June 4, 2004 11:04 PM CDT

The Stanford oncologist has recommended another treatment drug for Benton that will not cause pain. It is an enzyme and he knows of unpublished studies that show promising results. He likens our situation to a baseball game - the game isn’t over yet and even the Cubs win sometimes. As long as Benton feels well and enjoys life, we will pursue treatments. We were told that our insurance would probably not cover the cost (estimated to be $1,000 to $2,000 a month) but Dr. Yim and Joan were able to get it approved! Hurray!
We are going to Disneyland this weekend. Benton has been wanting to go and to fly on a plane. He wanted to go with his sister, like he did when he was five (see photo album - click on below). I will not be able to update this site until Monday or Tuesday evening.
Many, many thanks to Katie and Mitchell, Shawna and Nicole, Kathy and Talia, and Debbie for their support, generosity, and kindness - you are awesome!! Thank you to Jurgen, Bonnie, and Mrs. Harvey (congratulations on being Channel 10's Teacher of the Year - you deserve it!). And as always, thank you to our families and Benton’s teachers. May God bless you all!

Monday, May 31, 2004 4:08 PM CDT

We are still waiting for the second opinion from the Stanford oncologist before beginning another treatment. We know the options are dwindling, but continue to pray for healing for Benton. Benton has some slight trouble with his memory and right-side weakness, but overall is doing fairly well (no vomiting or pain). He enjoys life and appreciates visits or play dates, especially since school is mostly over for him.
Many, many thanks to all of you who have comforted us during time of sorrow. Thank you to those that have placed Benton’s name on a prayer list. Bless our wonderful families and dear friends who have supported us so that we may support Benton.

Thursday, May 27, 2004 12:01 AM CDT

We received bad news at the clinic yesterday. Benton’s main tumor grew again. The oncologists are going to consult a specialist at Stanford before they decide on his third protocol. We pray that the third one is the charm. Benton knows his tumor has grown, but isn’t ready for the full implications of this news. Bob and I are emotionally fragile right now and unable to comfort anyone but Benton. Benton does continue to feel well enough for company, so we would appreciate any visits or play dates.
Many thanks to Debbie for accompanying us to the doctors’ office and to all of you that pray for Benton. God Bless you!!

Sunday, May 23, 2004 6:44 PM CDT

Benton condition is fair. He has had to have chemo in the morning and again in the evening every day since last Wednesday. The new anti-seizure medication makes him drowsy, difficult to understand, and unstable. His g-j tube has become badly infected (we called the oncologist - he added another med. and I will take him into the clinic tomorrow). We now give Benton 21 doses of medicines each day. Benton still has not regained all the movement he had on his right side. In addition, the doctors believe that although the main tumor is stable, there has been growth in the new tumor sites. We will not know the final results until after tumor board meets on Tuesday. Needless to say, we are very worried. Please pray for Benton.
The nurses had all read the article ‘Helping Hands’ about Benton and his massages. They were very impressed and were even kinder to Benton than usual (if that is possible!). If you have not seen the article, go to www.reallifehealth.com and read the story ‘Helping Hands.’ It will only be out this month (May). We shared the room with a wonderful family - nine-year-old Joe has a malignant brain tumor also. We pray for them.
Many, many thanks to Aunt Vicki who slept over at the hospital, Katie for bringing over lunch and visiting, Katie and Mitchell for coming over to dinner, Lois Harrell for her visit, and Velaska and Diana for massages. A big thank you also to Grandma and Grandpa Regello for visiting and bringing dinner and to Talia for coming over to play. Benton feels well enough for company, so we would appreciate any visits or play dates. God Bless you!!

Tuesday, May 18, 2004 11:00 PM CDT

What a difference a day can make!! The last journal entry was written on Thursday just before I had to go out. When I returned from my dental appointment, Bob was home. Benton’s teacher, Erin, recognized that he had a seizure (he has never had one before) and immediately called Bob. Benton was not acting like himself - he was agitated and wouldn’t follow directions. Bob called Dr. Yim, who told us to take him to the ER. While we waited to be seen, Benton had another seizure. Dr. Yim and Dr. Wu made sure Benton was admitted at once. The blood tests revealed that Benton’s anti-seizure levels had dropped from 17 (they should be between 10 and 20) to three (3). We had been tapering off the anti-seizure meds because they interfere with the effectiveness of the chemo agents. CAT scans were inconclusive. We were released from the hospital about 8:00 pm on Friday (while at the hospital, Benton’s central line became plugged and they had to work on it for five hours, thus the late release time).
We had a good weekend - Benton went fishing and caught two trout (he convinced Dr. Yim to let us go on Friday so he could go Sat. am). Sunday we went to the Make-A-Wish walk where Benton turned in the $515 dollars he raised. Then Monday am he had another seizure - this time he became paralyzed on his right side afterwards. He didn’t even recognize his own arm - that was scary!! Again I rushed him to the hospital. He had another CAT scan and MRI - we do not have the results yet. Luckily, the movement has mostly returned
Many, many thanks to Erin and her quick thinking and to all his teachers for their support. Thank you so much to his wonderful doctors - Dr. Yim, Dr. Wu, Dr. Lee, Dr. Asaikar, and Dr. Edwards for their concern and help. We are very, very grateful to Shawna who had dinner for us when we came home on Friday, Debbie who spent the day with us on Monday and brought us lunch and lots of treats, Valeska who visited and offered Benton her ‘healing hands,’ to Grandma and Grandpa Regello for coming to the hospital to visit and give us a break, and to Katie who had dinner waiting for us today. May God bless you as you have blessed us!!

Thursday, May 13, 2004 12:09 AM CDT

Benton is feeling well. He still needs to take frequent rests, but what a huge difference! It truly is a miracle!!
Benton and Bob are currently going around to the neighbors and collecting money for the Make-A-Wish Twilight Walk this Sunday, May 16, here in Roseville. They have collected $300 dollars in just a few days (we don’t want to ask any of you that have helped us with meals to donate, you have done so much for us already - thank you!!). We are very pleased.
Francis, EZ’s grandmother, called us back the other day. It was her birthday and she is having a very difficult time with that and Mother’s Day. She misses EZ so much - he was her life, she was so devoted to him. No one could have been better to EZ. Please pray for them.
Many, many thanks to Katie and Mitchell who had us over to play, Julie for the delicious cookies, Shawna for the Quick Reads, and Grandma and Grandpa Regello who are coming today to stay with Benton while I have an emergency root canal. Bless you all!!

Monday, May 10, 2004 1:42 PM CDT

We had a very, very busy few days. On Friday, Benton went to school for Grandparent’s Day with Grandma Betty and Grandpa Don. He walked all over the campus and even walked home. Later that evening, he went to the rehearsal for Jessica’s and Patrick’s wedding. He was so excited because he was walking the mother-of-the bride, Debbie, down the aisle (they would have made him the ring bearer, but were worried that it would be too much standing for him). Saturday during the day, Bob and I went to a care giver’s workshop for pediatric brain tumor patients (more on that later), so Benton stayed with Grandma Betty and Grandpa Don. We rushed home and prepared for the wedding. Benton was so pleased wearing the tuxedo, and he just beamed the whole time!! Debbie was so wonderful to him (as always), saying he was her date and introducing him to everyone. Bob cried as Benton went down the aisle, we were so happy he was able to do so (even a month ago, it was not looking good). It was a beautiful wedding!! Then on Sunday, Grandma and Grandpa Raiser left and we went to Aunt Vicki’s in Yuba City. We had fun celebrating Mother’s Day and Aunt Vicki’s birthday with her, Aunt Val, Grandma and Grandpa Regello, Cousin Heather, and Mike.
The pedantic care giver’s workshop for brain tumor patients was sobering and informative. Although it didn’t go over some areas I needed help with (obtaining respite care, emotional, community, and financial support), Dr. Edwards in particular, did an outstanding job explaining tumor growth and treatment. He made it very clear to us that we should not be thinking of when Benton can stop chemo or have his tubes removed, until after the tumor cells are under control (even though his primary tumor has responded the last two cycles, his cells are very aggressive and have invaded other areas of the brain). He said to Bob and me at the very beginning of the day, “we have had a little miracle here with Benton.” It is a miracle, and we are very grateful to his outstanding doctors, those of you that pray for Benton, and to our Heavenly Father, for letting him feel so well and letting us enjoy him - Benton is a love! May God bless you!

Thursday, May 6, 2004 11:56 AM CDT

I knew I shouldn’t say anything about the number of medicines that Benton takes - it has now increased by two! Benton had chemo at the oncology clinic on Tuesday. We usually leave at 8:15 a.m. and arrive home by 1:30 to 2:00 p.m.. Grandma Betty came with us, so the time went quickly.
Many thanks to Grandma Betty and Grandpa Don for visiting and helping us out. It’s been over a year now and we are tired. Thanks also to Cousin Jake for a nice visit. Maybe God Bless you!!

Monday, May 3, 2004 11:43 AM CDT

Benton has only thrown up a few times since beginning his newest chemotherapy agent, VP-16 (Epotoside). He feels well and is still eating. Benton now takes three chemo agents, a night time feed with a pump through his g-j tube, seven drugs one to four times a day, and an additional five medicines daily, as needed. It looks (and feels) like a pharmacy here!
Benton had a fun time going to school to ‘help’ Mrs. Harvey and her first graders. He is keeping up with his own school work with the help of his wonderful teachers - thank you! We want to thank Aunt Vicki for her visit. Thanks to those of you that call Benton. And thanks to Grandma Betty and Grandpa Don for coming to stay for a week. May God bless you!

Thursday, April 29, 2004 1:19 PM CDT

Benton is still feeling well and eating heaps of Waffle Crisp cereal. After having chemo at the Oncologist’s office on Tuesday, we added the third chemo agent (VP-16). He is to take it daily for two weeks. The doctors said that by the second week his blood counts will begin to drop, but we will have to see by how much.
Two notes - the article in the RealLife publication for healthcare professionals, entitled ‘Healing Hands,’ will be out in May on www.reallifehealthcare.com. Also, I was asked how Benton earned the Youth Inspire Award. Recipients were selected because of the heroic resilience (overcoming challenges such as blindness and brain cancer), community service (Benton started a Neighborhood Watch here even while being treated for cancer), and strength of character.
Many, many thanks Debbie for spending the night on Monday and coming with us to chemotherapy on Tuesday. Thanks so much Mrs. Harvey for having Benton come help her at school and making him feel so special and welcome. Thank you to Benton’s wonderful doctors and nurses, both at the office and hospital. Benton loves to see them (I heard another mom say that her son, Junior, loved to come to the Oncologist’s office too!) and they are so kind. Thanks Cousin Heather for visiting us during your lunch hour. May God bless you all!

Monday, April 26, 2004 1:23 PM CDT

Benton felt strong enough to go on two bike rides this weekend. He hasn’t felt that well for more than six months! He is also eating - huge amounts of Waffle Crisp cereal and pizza (on Saturday evening). It was only three months ago that the doctors told us that we wouldn’t have much more time with Benton. We thank the good Lord every day for his healing!!
Benton is one of the subjects in a new article out in the RealLife publication for healthcare professionals. Candy Goulette wrote a beautiful piece entitled ‘Healing Hands’ and the pictures by Charr Crail are wonderful! I believe you can find it on: www.reallifehealthcare.com.
We want to thank Del and Mitchell for going on a bike ride with us and taking Benton on an exciting ride in Del’s semi-truck. Thank you to Katie, Del, and Mitchell for treating us to a wonderful pizza dinner - it was like old times at Round Table! Thank you for fun visits from Aunt Val and Kylie and fabulous massages from Valeska and Diana. May God bless you all!

Thursday, April 22, 2004 4:10 PM CDT

Benton continues to get stronger every day. On Wednesday, he went to school for two and a half hours (the first time in a long time!). Today, he accompanied Bob to work for Bob’s ‘Take Your Child to Work Day’ - he woke up at 5:30 a.m., left home at 6:00 a.m., and I didn’t pick him up until 11:40 a.m.. He had a blast - answering phones, running errands, and meeting the people that work with Bob.
We want to thank Frances and Christina (EZ’s grandmother and big sister) for a wonderful visit, treat for Benton, and delicious dinner. They came over on Monday, three weeks to the day of EZ’s passing. It was very difficult for them, but we are very grateful for their support during their grief. Thank you also to Nicole for a fun visit on Monday. Thanks to Mitchell, Katie, and Del for coming with us to fly a toy airplane at the park. We want to thank Tracy and Katherine from Make-A-Wish for their nice visit. Many thanks always to Benton’s teachers.

Monday, April 19, 2004 1:16 PM CDT

We are amazed at the stamina that Benton has had of late. He is able to stay up all day, go to stores, and take walks. He has hair (it’s chemo hair - rather frizzy and thin) and the new growth of his toe nails is so much healthier looking. I thank the Lord every day that we have this time where he feels so much better.
On Friday, we went to Benton’s Cub Scout meeting. We wanted to thank Dens 1 and 3 and especially the Den Mothers (Tammie and Diane) for their support (they gathered gift certificates, money, and treats for Benton). I wanted to say much more, but I started crying and couldn’t get anything more out. We are very grateful to them.
Benton was baptized on Sunday, the Sunday of Devine Mercy. It was a beautiful ceremony. We had a great time back at the house and Benton was just beaming!! May God Bless all of you who came and all that wanted to attend but were unable to - you are wonderful!!

Thursday, April 15, 2004 12:03 AM CDT

Yesterday was chemo day. Benton did a wonderful job. While we were there, Dr. Yim called me back to speak privately with me. My heart always sinks when they indict they want to talk to me alone. Dr. Yim said that the good news is that Benton’s main tumor has decreased in bulk and, of course, his quality of life is much improved. He told us not to worry, but there are some new areas (probably a spread of the PNET) in the brain. Benton will have to add a third chemotherapy agent on weeks four and five; if that doesn’t improve the situation, they will change the chemo again. As Kathy said, it feels like we are on an out-of-control roller coaster. We need to focus on enjoying life today, and not waiting for the future. Benton knows that he will start another taking another chemo (VP-16 - he had it previously).
Benton will be baptized this Sunday at 12:15 p.m. at St. Clara’s Catholic Church. We are very grateful to Kathy (sorry, I‘ve been misspelling it Kathie) and Deacon Carl for arranging Benton’s baptism. It is on the Sunday of Devine Mercy - so we are very happy about the date. To find out more about it, refer to:
www.apparitions.org/faustina.html

www.vatican.va/news_services/liturgy/saints/ns_lit_doc_20000430_faustina_en.html

We will have finger food and cake after the service - we are expecting about 25 friends and family at this point (we have room for more!) Please let us know if you can come! Your presence is our gift - NO additional gifts, please!!
THANK YOU to Diana and Valeska for wonderful massages. THANKS to Aunt Vicki for the visit. THANK you to Gayle for returning my purse (when I’m stressed I do even dumber things than normal!). THANK YOU very much to the person (was it you Dianne?) who nominated Benton for the Youth Inspire award that he was presented with on Tuesday evening. Blessing to you all!

Monday, April 12, 2004 2:48 PM CDT

Benton has vomited about once per day - perhaps it is the increased dose of chemotherapy. He just finished the at home chemo (Temador) and then will have Irinotecan at the doctor’s office this Wednesday.
Benton will be baptized this Sunday at 12:15 p.m. at St. Clara’s Catholic Church. His godparents will be Debra Weeks and Vicki Van Netta. We are very grateful to Kathie and Deacon Carl for arranging Benton’s baptism. We will have finger food and cake after the service - please let us know if you can come!
We continued to have a fun time this Easter break and have many people to thank. THANK you to Katie, Mitchell, Shawna, Nicole, and Jake for letting us come bowling with you on Thursday. Mitchell was a great helper setting up Benton’s bowling chute and Nicole was terrific helping Benton up the step. Benton received mail and treats from Dianne and John Flynn and Grandma Betty. On Friday, we rented a cabin in Tahoe - Benton has wanted to go for a long time. He was disappointed their was no snow, but had a great time with Dave and Debbie. On Easter Sunday, we had a wonderful brunch with Mitchell, Del and Katie and then had a fun visit with Jill, Mark, Ashley, and Nicole at their beautiful new home. Tammi called and lifted our spirits. THANK you all - we pray for our special angels every day!

Thursday, April 8, 2004 8:16 PM CDT

Benton did have chemotherapy on Tuesday and started the chemo cycle over again. The doctors increased one of the chemo agents. Benton did a great job - he has been ill twice since beginning the drugs, but he doesn’t let it slow him down.
Benton will be baptized next Sunday at 12:15 p.m. at St. Clara’s Catholic Church. His godparents will be Debra Weeks and Vicki Van Netta. We are very grateful to Kathie and Deacon Carl for arranging Benton’s baptism.
We have had a fun time this Easter break and have many people to thank. THANK you to Carolyn, Kameron, Madison, Ann, and Sarah for visiting with Benton on Monday. THANK you to Katie and Mitchell for taking us kite flying on Monday also. We want to THANK Debbie for coming with us to chemotherapy on Tuesday. On Wednesday, we had great visits with Bonnie and Austin and Julie and Jack (THANK YOU for the visits and the treats). Today, Benton had a terrific time bowling with Mitchell, Nicole, Jake, Shawna and Katie. We had a wonderful time when Heidi (Benton’s last Braille teacher) and her sons came to see Benton. May God Bless you all!!

Monday, April 5, 2004 3:01 PM CDT

Great news - Benton had his MRI on Friday and the results are in already - the tumor has remained stable, maybe even shrinking a tiny bit!! Hallelujah!! The doctors are on the right track! Benton has had more energy - we think perhaps he was fighting something last week which caused him to be so tired. Benton will have chemotherapy tomorrow. We are not sure if he will make-up the chemo he missed last week or start the cycle again.
On Saturday, Deacon Carl from St. Clara’s Catholic Church came by to see us. Benton will tentatively be baptized on April 18th at around 12:15 p.m. We are in need of a Catholic man to be Benton’s Godfather. Everyone is invited to the service and to have lunch at our house immediately following - more information to come.
Many, many THANKS to Shawna, who came to watch Benton so I could go to the doctor’s office (unexpectedly), and for lunch and delicious bread. THANK YOU to Dr. Stene for arranging for Benton to have his MRI of the brain and spine completed all on Friday (it was originally scheduled for two different days). THANKS to Deacon Carl and Kathy for making the arrangements for Deacon Carl’s visit. And THANK YOU to Katie, Del, and Mitchell for taking us fishing and treating us to a great picnic lunch. We love you all!! You are wonderful!!

Thursday, April 1, 2004 11:51 AM CST

Benton continues to be very tired. His oncologist (Dr. Yim) was sufficiently worried enough to cancel his chemotherapy treatment on Tuesday and move up his brain MRI to Friday. Drowsiness is another sign of brain tumor growth. He seemed more alert yesterday; now we will just have to wait until we receive the results next week.
EZ’s funeral notice is in today’s Roseville Press Tribune (his full name is Ezequiel Mendoza). Memorial donations can be made in EZ’s name to Sutter Medical Center, 2800 L Street, Suite #620, Oncology Department, Sacramento, CA 95816. A private service will be held through Cochrane’s Chapel of the Roses, 103 Lincoln Street, Roseville - 783-7171.
Many, many THANKS to Shawna and Nicole for having Benton over to their house to play and for the terrific gift - you are terrific!! THANK YOU to Debbie for spending the night and coming to chemo with us - and to Dave and Debbie for spending time with Benton Wednesday afternoon - we had a blast!! THANKS to Katie and Mitchell for visiting and playing - you’re wonderful! You are our special angels - we pray that God Blesses you as you have blessed us!!

Monday, March 29, 2004 12:49 AM CST

Benton has been very tired these last few days. He has slept late, gone to bed early, and says he, “is just exhausted.” He has vomited several times and seems to have a constant headache. Still, he was able to go to the mall and to Grandma and Grandpa Regello’s to celebrate Auntie Val’s birthday.
On Friday, EZ’s grandmother (Francis) called to say that EZ had relapsed. He had been doing so well with his bone marrow transplant until the last two weeks. The doctors told her there was nothing more they could do, and EZ had about two months. This morning Francis called to say that EZ passed away at 4:00 am this morning. He was a brave fighter. He loved his grandma and Poppa and video games. EZ was seven years old. God Bless him.
THANKS to Mr. And Mrs. Harvey for visiting us this week - we had fun! Please say a prayer for EZ and his family.

Thursday, March 25, 2004 12:03 AM CST

Benton saw Dr. Yim and had chemotherapy yesterday. Dr. Yim said Benton looks fairly good, considering all he has gone through. It is always a long day, and we were happy that Debbie accompanied us.
Benton’s medical team lost another young boy, Hunter, who was eight years old. Bob and I have a feeling of loss; the loss of our former life, the loss of some friends (some formerly good friends have just dropped out of our lives), and the loss of Benton’s health and independence. We have gained much however - the love of truly good family and friends, including many new friends, the ability to know what is important and what is not, and the capacity to live for the day.
Many, many THANKS to Debbie for spending the night on Monday and going to chemo with us. THANK YOU and many blessings to you all!

Monday, March 22, 2004 1:12 PM CST

We are found that when we do not give Benton the anti diarrheal medicine, that he usually does not vomit. We prefer to deal with the diarrhea than have Benton throw-up. Since changing to this new chemotherapy, when Benton does have emesis, it doesn’t sound as if his whole insides are coming out, as it did before. It was a heart-wrenching sound.
Bob has finished our income tax (with the help of Turbo Tax). Last year, starting from April 5 (the day Benton’s brain tumor hemorrhaged creating stroke effects), we have driven more than 5,000 miles for medical appointments/hospitalizations, spent over 90 days in the hospital, paid more than $2500 in co-pays and close to $3000 in medicines. We didn’t even count the money spent for parking or food while at the hospital. We are lucky we are insured!
Many THANKS to Mrs. Harvey, who came to visit on Friday evening. Bob and I went out for pizza - what a treat!! THANK YOU also to Aunt Vicki and Cousin Heather who came on Saturday and took Benton to the race cars (he hasn’t done that since last summer!), where we saw Mitchell and Del. THANKS to Veleska for a wonderful massage. THANK YOU Talia, Katie, and Julie for fun visits. And THANKS Grandma and Grandpa Regello for playing with Benton and scratching his back while Bob and I went shopping. Benton had a wonderful time with you all!! May God Bless you!!

Monday, March 22, 2004 12:36 AM CST

Thursday, March 18, 2004 12:00 AM CST

Benton has continued to vomit three or four times a day. He also has diarrhea. In spite of this, he has enjoyed walking with Aunt Jody, Uncle Dennis, and Cousin Bud (their dog) many times a day. He also loves to play Uno, went to Toys ‘R Us yesterday to spend his allowance, and sat at the dinner table with us to eat a few bites of ascrambled egg (he hasn’t done since around September). Benton wants more company, so if you can come visit, this is a great time.

We want to THANK Aunt Jody and Uncle Dennis for their visit during their vacation. THANK you also to Benton’s wonderful teachers - Carolyn, Lynne, and Erin for keeping him up with his class - he earned a terrific report card!! THANK you to Dianne and John for the fun package that you sent Benton. And THANK YOU to our awesome family and friends who check in with us every day -we love you Debbie, Katie, Grandma Betty, and Aunt Vicki!! God Bless you all!!

Monday, March 15, 2004 3:51 PM CST

Benton is walking around the block four or five times a day. He is bouncy and happy. He had two days where he didn’t get sick, but yesterday he threw up four different times. That is a worry to us; his next MRI is scheduled for April 6th, so we will see how things are going.
EZ is still in UCSF hospital. They have been there more than two months. He was right on schedule to leave after six to eight weeks, until he developed a fungus in his lung (the radiation and chemotherapy lower your immunity to the flora around you - especially kids, since they receive such a huge dose compared to adults). EZ had surgery to remove a part of the infected lung - now they had to wait and see how he recovers.
In Thurday's Sacramento Bee, we saw a memorial to Trevon, a boy we shared a hospital room with for several days. He passed away in August and this March was his tenth birthday. They miss their baby boy - we pray for all the children who must endure this terrible illness.
We want to THANK Nicole, Shawna, Katie, Kylie, Emily, Grandma and Grandpa Regello, and Aunt Jody and Uncle Dennis for their visits - Benton has enjoyed them so much!! THANKS also to the kids in Benton’s class who have started a sending letters to him. May God Bless you all!!

Thursday, March 11, 2004 3:50 PM CST

Benton had chemotherapy at the doctor’s office yesterday. He did well. He still is throwing up (twice today) - during the last cycle he stopped after the second chemo treatment and we were hoping for the same this time. Dr. Yim said that the final results of the MRI showed that Benton’s tumor stayed the same with perhaps some slight improvement. He said the results were much better than he anticipated and Benton will continue with this therapy as long as it is effective - we pray that is a good long time!!
Bob is trying to clear up some problems with the insurance company, and he has had to file a grievance with Blue Shield HMO. We are very grateful they have helped us so far, but when there is a dispute, it is very difficult to get it straightened out. Poor Bob only had a few hours of sleep last night - Benton woke him up to say, “I love you Dad.” I took a sleeping pill, so I’m feeling OK.
We want to THANK Debbie for staying the night on Tuesday - she comes over once a week and she and Benton have a ‘sleep-over’ so Bob and I get an uninterrupted night’s sleep. BLESS YOU Debbie!! THANKS also for phone calls from Katie, Mitchell, Del, Nicole, Shawna, Talia, and Kylie - they mean so much to us all!! May God Bless all our angels!!

Thursday, March 11, 2004 3:50 PM CST

Monday, March 8, 2004 1:12 PM CST

Benton has done well with the chemotherapy drug we give him at home (Temador). He has thrown up once per day - but that is a decrease from last week (before the beginning of this this six-week chemo cycle) when he had emesis two to four times per day. He has been walking around the block several times a day (four or five times yesterday). He even wanted to go for a bike ride this weekend (he hasn’t been on his bike since August!). He is still too unsteady for the bike, but we did take a car ride to Yuba City to see Aunt Val and Grandma and Grandpa Regello - again, the last long car ride was in August or early September. It’s hard for some people to realize how sick he really is when he is feeling so chipper. We have thanked St. Jude for prayers answered in the Penny Saver and Bob went to St. Rose to thank the good Lord. We pray for continued healing for Benton.
THANK YOU to Aunt Vicki and Grandma Regello for coming to visit with Benton on Friday evening. Bob and I went to dinner at Chevy’s. THANKS also to Grandma Regello for paying for our dinner! And THANKS to Katie and Mitchell for bringing over dinner and playing games with us! Benton is particularly bored right now - he feels better but still can’t do so many things. He called lots of kids on Sunday, but no one could play and many didn’t answer his calls. If you can visit Benton, now would be a great time (we thank those who wait because they are ill). May God Bless you for supporting Benton!!

Thursday, March 4, 2004 12:05 AM CST

Wonderful news!! The preliminary report from Benton’s MRI on Monday shows no tumor growth and even some shrinkage in areas. It is an answer to our prayers - Praise the Lord!!
Benton had chemotherapy yesterday and tolerated these drugs fairly well. We pray that these chemo agents continue to attack Benton’s tumor.
We want to THANK everyone who has prayed for Benton’s improved health. Many THANKS also to Katie who accompanied Benton to his MRI - you made the time go faster Katie!! THANK YOU also to Debbie who spent the night with Benton (having a “sleep out”) on Tuesday and brought over enough food for many dinners (I may never cook again!) - we all love your visits Debbie!! May God bless you all!!

Monday, March 1, 2004 12:49 AM CST

Benton is still vomiting a few times a day. We have changed some of his medications but to no avail. We will talk to the doctors when he goes in for chemotherapy on Wednesday (although they were unable to help him previously). Benton was able to go to school for an hour on Friday; he had a great time. Today Benton has a MRI - he is excited about it, but Bob and I didn't get much sleep. We hope to have the results on Wednesday (it takes several days for the doctors to read the results, measure the tumors and compare them to past MRI's, etc.)
We want to THANK Shawna for bringing us a meal - it was delicous Shawna! THANK you to sweet sister Becky, cousin Jake, and Shawna for coming to visit - Benton is very social and he loves company!! THANK YOU to all for the prayers and phone calls!

Thursday, February 26, 2004 3:46 PM CST

As quickly and miraculously as it ended, Benton’s vomiting is starting again. He has been waking up in the night and also vomiting during the day (four times already today). It breaks our hearts. We are trying to adjust his medications to see if there is anything we can do to help our dear boy.
Jurgen (our friend from Germany), arranged for Tony and Bill from Enchanted Hill Camp (a camp for visually impaired kids that Benton loves to attend) to come visit Benton. They drove from San Francisco on Monday and brought Benton a T-shirt and tape. THANKS Jurgen, Tony, and Bill for your fun visit. THANK YOU also for visits from Nicole, Julian, Katie and Del. And MANY THANKS to Debbie for coming to spend the night so that Benton can have a ‘sleep-over’ and Bob and I can have some time together. THANKS to all of you who pray for Benton and send him messages.
May God Bless you!

Monday, February 23, 2004 9:39 PM CST

I am sorry I did not write a new journal entry this last Thursday. I always try to update Benton’s web site on Mondays and Thursdays, but time slipped away from me this last week. Please accept my apologies.
Benton is feeling better all the time. He rarely vomits any more (praise God!!). He is able to sit up and talk to visitors. It’s hard not to get our hopes up. He had chemo at the doctor’s office last Wednesday; he has a week off now. His next MRI is Monday, March 1st and we’ll know more what will come next at that point.
We all had a wonderful week with Grandma Betty and Grandpa Don. Grandpa Don put on a security screen door so Benton can get a fresh breeze and hear the birds. Grandma spent the day with us when we went to chemo. Benton is always sad when they return home. THANK YOU Grandma Betty and Grandpa Don! Tammie and Bailey from Boy Scouts came twice also, and they brought all kinds of treats for Benton and gift certificates for us from two Boy Scout Dens. Many, many, THANKS to Tammie for her wonderful support, her kindness, and for getting the word out to the other Scouts! And THANKS to Deborah, another Den leader, for the wonderful gifts for our family! THANKS to all of families that helped us in Den 1 and Den 3. THANKS also for visits from Sarah, Cassie, Aunt Vicki, Aunt Val, and Grandma & Grandpa Regello.
Many blessing to all the angels who help Benton and us so much!!

Tuesday, February 17, 2004 12:44 AM CST

Benton has had more energy these last few days. I helped him go to all the neighbor’s homes to deliver some Neighborhood Watch information. He sits up more and works hard with his teachers. He has been especially excited because Grandma Betty and Grandpa Don are here for a visit (THANKS Grandma Betty and Grandpa Don). We are worried because he has vomited and had many more headaches lately (headaches and vomiting are signs of a brain tumor). We will have to wait until the March 1st MRI to know what is going on. We have asked that if the tumor has grown again, that we be referred for a second opinion (Dr. Yim was fine with this and will send us to Stanford where there is a neuro-oncologist). EZ’s grandmother and Don from Lodi Cancer Kids have also encouraged us to go to UCSF where they have clinical trails for kids whose brain tumors have progressed while under treatment.
We have many people to thank. Mrs. Harvey cooked a Valentine’s dinner (planned by Benton) for us - delicious!! She also gave us some movie tickets. Benton was so excited about the plan - he talked about it all week! THANK YOU Mrs. Harvey! Our neighbors also brought us a wonderful treat basket - MANY THANKS Julie, Eric, and Jack for your support! THANKS Shawna, Nicole, Grandma and Grandpa Regello, and Katie for your visits. Benton loves the cards and guest book wishes he receives - THANK YOU. And THANKS to the very kind Make-a-Wish ladies, Kathy, Tracy, and Diana for fulfilling his wish for massages.

Thursday, February 12, 2004 5:42 PM CST

Benton has continued to eat some food and keep it down. He only vomited once since the last journal entry. Even though his hemoglobin is low, he has more energy and you can see a sparkle in his eye and some of his terrific sense of humor. He never complains or feels sorry for himself, if fact, he often protects us when he feels terrible. He is such a sweet, loving boy. Benton is always telling us how much he loves us and has said that when we are old and sick, he will take care of us.
Yesterday Benton had chemotherapy at the doctor’s office. Employees there kept asking me, “How you doing?” in happy voices. I wanted to say that I am doing awful, my precious boy is so ill and no one can fix it. But I keep myself together for Benton’s sake. We left home at 9:15 a.m. and didn’t arrive back until 3:45 p.m. Benton stayed awake and alert the entire time. We are so proud of how he handles himself in these difficult situations - very few adults would be so mature.
Benton has receive two massages from the Make-A-Wish foundation. We didn’t get sweet Valeska, who has given several massages to Benton. Valeska has told us how taken she is with Benton and has even given him several massages for free because she cares for him so. THANK you Valeska for your healing hands and kind heart. THANK you to his teachers, Carolyn, Lynne, and Erin, who say Benton works very hard and does his best even when he is so ill.
May God Bless all of you who love and support Benton!!

Monday, February 9, 2004 2:25 PM CST

Benton continues to eat cookies, B-B-Q chips, and popcorn and keep it down. What a miracle!! His leg feels better and he has gone for several short walks. He is starting to complain about having some headaches. We are taking one day at a time.
We have so many people to THANK this week - Nicole, Shawna, Sarah, Solana, Grandma and Grandpa Regello, Aunt Val, Mrs. Harvey for wonderful visits. THANKS also Stephanie, Kaitlin, Aunt Vicki, and Mike for visits and dinner. And many THANKS to Debbie and Dave for having Benton spend the night again. He has such a great time! God Bless all our angels!!

Thursday, February 5, 2004 3:34 PM CST

Benton has been feeling much better, and he has thrown up only two times since last Thursday - a record low!! He feels better, is more alert, and has many more smiles. He even gained several pounds and is eating frosted animal cookies like mad. He does have a pain in his left leg and the doctors are monitoring it because he is at risk for clots. No chemo this week (he is on break), he starts again next Wednesday.
Many THANKS to Kylie and Loyce for visiting and playing with Benton. A big THANKS to Cousin Sandra who found an organization called Lodi Cancer Kids Funds that provided us with gift certificates to Safeway and Shell. THANK YOU to Debbie for taking care of all of us, providing dinner, having a fun sleep over, and letting us get a full nights sleep. And THANKS Dr. Crockett for sending a CD to Benton and to all the kids in his class for sending him warm wishes and happy thoughts. Bless you all!!!

Sunday, February 1, 2004 11:16 PM CST

Since his last chemo treatment on Wednesday, Benton has done surprisingly well. He has vomited only once in four days, has taken some walks and short trips, and even used the urinal a few times. He is more alert and feels better. We pray it continues!!
Because he feels better, Benton has had more visitors (thanks to the folks who call but don’t visit when they are ill). Tammie, Bailey, Katie, Grandma and Grandpa Regello, Talia, Kathy, Kaitlin, and Stephanie have all come by to play or read to Benton. Also, Mrs. Welty, a teacher at his former school, came by. Benton had quite a crush on Mrs. Welty; she said they must have known each other in a former life, because they made such a connection. Veleska, from Healing Hands, Healing Hearts, came by to give Benton a massage - he slept the whole night (the first time in months and months). On Friday, Benton went to school for Fun Fair - he had a great time! Benton wanted to spend the night at Debbie and Dave’s on Saturday (like the old days). Bob and I want him to enjoy himself and know he is in great hands with Dave and Debbie, so he went and had a wonderful time!!
We wanted to give our heartfelt THANKS to all those that visited us and brought us treats/meals! THANKS Mrs. Wetly for the visits, quilt, and tapes! THANKS Carolyn and Veleska for your healing hands! THANKS Debbie for learning how the feeding pump works so Benton could spend the night and for your generous offer of help!! Bless you all!!

PS - EZ’s grandmother called us, and he is on the middle of his bone marrow transplant at U.S.F. She says he has very bad mouth sores, but they finally increased the morphine dose and he feels better. Everything is on schedule for him. We will keep you informed.

Thursday, January 29, 2004 3:40 PM CST

Benton is doing fairly well. He had chemo yesterday and did vomit three times, but has now gone nineteen hours without throwing up!! He also walked into the oncologist office yesterday and went down our stairs this morning by himself (Bob and I were holding onto him). He is very alert and not as tired. He has several fun activities and visits to look forward to in the next several days. We want him to get as much enjoyment as possible now.
We have been trying to straighten out insurance copays, look into some home care help (if possible), and other errands while Bob is off this week. I also went to my doctor - my blood pressure was sky high, from nerves, she thinks.
MANY, MANY thanks to Grandma Betty, Debbie, and Katie who check up on us everyday, Donna for getting in touch with Mrs. Welty (a teacher Benton had a crush on in Kindergarten and still talks about), Aunt Val and Vicki for visiting and bringing dinner, Nicole and Shawna for playing with Benton, a visit from Mrs. Harvey (and more to come) and Benton’s teachers for working with him at home.

Monday, January 26, 2004 1:03 PM CST

Benton was able to leave the hospital on Friday afternoon. He is starting to become dehydrated again and the vomiting is increasing - we hope the GI doctor will be able to help him soon, or he will quickly be back in the hospital (not that Benton minds, he loves the hospital because of the very kind nurses, doctors, and staff!).
Benton asked Dr. Yim for a hospital bed and he quickly arranged for one to be delivered. Benton is enjoying laying in the bed in the family room during the day (he still sleeps with one of us at night so that we can monitor the vomiting, medicines, and feeding pump.) Bob and I are concerned that he doesn't want to get out of bed all day and night, but were very glad when he wanted to talk on the phone for almost two hours last night. He is working with Carolyn, his Braille teacher, right now.
A representative from Make-A-Wish came to ask Benton about a wish yesterday. He wished for massages every other day for a long time. If he had more strength, he would have wanted to go somewhere (he talked about a plane trip, going to Disney World, Grandma Betty and Don's in Oceanside, and to Grandma and Grandpa Regello's house), but he is too exhausted. I think that he has been hurt, poked, and prodded so much, that comforting massages would be great for him. Carolyn has given him some terrific massages, and they really help him.
Many THANKS to Benton’s sister, Becky, for coming to stay with Benton and staying the night with him - he loves his wonderful sister!! THANKS also to Aunt Vicki, Cousin Heather, the Schellengers for great visits. We had Kathy’s excellent enchiladas and used the gift certificate for Brookfield’s from Shawna - they were outstanding! THANKS for those who have provided food for us. THANK YOU Carolyn for the massages for Benton. And THANK YOU for those that pray for Benton.

Thursday, January 22, 2004 10:27 PM CST

Benton is again in the hospital. He continues to vomit. The GI doctor is working hard to help him. In addition, the last MRI showed growth of the tumor, so his chemotheraphy agents were changed. The doctor said that they have had some good results from the new chemo drugs he is getting now. He received chemo yesterday, and will also take a pill form of chemo daily. We hope to be home by tomorrow.
Benton is feeling somewhat better - he is able to carry on a conversation and is not always saying he is exhausted.
MANY, MANY thanks to Grandma and Grandpa Regello for their visit, Debbie for staying the night with him, Dianne and John for the fun package of foam stickers, and Shawna and Katie for dinner and treats. And as always, a heartfelt THANKS to the kind nurses, doctors, and staff at Sutter Memorial Hospital - you are wonderful!!! Benton has also had five doctors and three nurses come specifically to visit him - Drs. Asaikar, Crockett, Pu, Transtrum, and Thomas, & nurses Stan, Renee, and Jolie - We love you!!
Please keep Benton in your prayers.

Monday, January 19, 2004 1:39 PM CST

Benton was admitted to the hospital from Wednesday, Jan. 14th to Saturday, Jan. 17th because of vomiting/lack of nutrition. We had gone to the GI doctor on Wednesday am, and she said she supported him being admitted and would see him in the hospital on Thursday. Benton had a difficult night Wednesday, vomiting and having wild dreams. He asked Debbie if he would ever feel better. We waited all day Thursday and, even though we called several times, the GI doctor never came. Finally, she called the nurse and said she decided not to feed Benton and had something else to do (the hospital was waiting for her order to give him the liquid formula he takes by g-tube; he hadn't had any nutrition for four days at that point), but would come see him the next day. I think she was surprised when I was not elated to see her late the next morning. She talk me into having Benton's g-tube extended to his intestine, making it seem like a simple procedure. Benton went in without us while we waited over an hour and a half. The doctor, nurse, and techs who performed the procedure all expressed their admiration of Benton's courage and sense of humor. Benton was finally fed one can of formula (237 calories) on Friday night, after several calls to the GI doctor because she failed to write orders for the course of treatment we discussed. We have had such great doctors - what a shock to work with such a flake! We hope to change GI docs.
While in the hospital, we had the worse room they have at Sutter Memorial. It is two double rooms with a large opening conecting the two rooms because they share one bathroom. The nurses were very kind and didn't put another patient in our room, however, there were children and their families in the other room most of the time and you can hear everything they say and do. Nurse Terri was especailly kind because she saw to it that we were alone on Thursday night so Benton could get the rest that he needed. THANKS nurse Terri!! The last two days and one night, there was a crying baby whose mother was being investigated by CPS for a fall the child had taken, the mother, father, and three year old sister along with a three year old child with two broken legs and his mother. It was a zoo!! Then, the mother of the child with the broken bones left the child for hours and hours and he cried and cried. My nerves were shot.
Next, we had a problem getting the new liquid food Benton is to be on now (it's a higher calorie formula. The agancy who supplies it lost the order (then told me they never recieved an order form the hospital disharge planner). In addition, the MRI results are not final - we will see the oncologist on Wednesday pm after the tumor board reviews the scans. All in all, it was a very, very difficult time.
We do need to give a big THANK YOU to Aunt Val and Cousin Jake for spending the night with Benton - you cheered him up alot!! Also a big THANKS to Katie for bringing over a delicous dinner when we came home!!

Wednesday, January 14, 2004 9:52 PM CST

Benton is back in the hospital today. He got his mri yesterday and has not been able to keep anything down so we went to the doctors this afternoon and they admitted us.
The are hydrating him now and we will start a new formula
feed tomorrow and hope his food will stay in him.

We have not gotten any results back from the mri yet. We should hear something on Thursday.

All three of us have colds now. I'm almost over mine and Jeanne and Benton have just started theirs. Our good friend Debbie is staying the night with Benton and we will try to get better with some rest tonight. Thank you Debbie, you are an angel!!

Thanks to everyone that called and left such nice messages!

God Bless you all!

Sunday, January 11, 2004 6:45 PM CST

Benton had a fairly good week. He had very little vomiting. He saw the ENT doctor on Thursday and he said that the vomiting is not throat related, but that Benton's throat is still red and he has VPI because of the radiation. On Friday Benton had a gastric emptying study. We will receive the results on Wednesday when he sees the GI doctor.
On Tuesday of this week, Benton will have a MRI. We won't know the results for a few days - but most likely, they just tell us that the tumor hasn't grown. They won't know how the cells are responding. We will let you know as soon as we know. It is an especially nerve racking time.
Bob now has a full blown cold. He has slept most of the day. Benton wants to sleep all day too.
Grandma Betty returned to Oceanside today after a week stay. She was a blessing!! THANKS Grandma Betty and Grandpa Don! We had visits from Kylie, Mitchell, Katie, Grandma Regello, Aunt Vicki, and Cassie - THANK YOU!

Wednesday, January 7, 2004 9:41 PM CST

Benton has had a good few days, except for taking a scary tumble down the stairs. He retches often, but hasn't vomited for several days. Bob has been giving him Ativan and we think that has been helping.
On Monday, we had a wonderful IEP at the school for Benton - many, many THANKS to Heidi, Lynne, Mary, Pete, Bobbie, and Carrie!! What a blessing to have the school support during this difficult time! Benton is now receiving many more services at home while we wait to see if we can get the nausea and emesis under control (also the oncologists are worried about the severity of the cold and flu season this year, and want Benton to stay away from school temporarily).
On the subject of emesis, tomorrow Benton sees the ENT and on Friday he has a gastric emptying study. We all hope that some answers will be found - it's just miserable to retch and vomit all day.
We are all loving Grandma Betty staying with us - we can get so much more done sharing the load. I was even able to go to the mall! THANKS also to Nicole for playing with Benton!
Bless you all!!

Sunday, January 4, 2004 9:04 PM CST

After four unplanned days in the hospital (a total of approximately 72 days in the hospital since April 2003), we were happy when the oncologist said Benton's ANC went from zero, to 294, to 3500 in three days. The big jump is attributed to the injections I have to give him for ten days after chemotherapy. Benton was sad to leave the hospital, but we were delighted!!!
Benton is still vomiting several times a day - it makes him feel miserable. Bob and I jump every time he makes a noise and our nerves are shot. I am embarrased to say that we often snap at each other, which doesn't help Benton or the situation. Many marriages do not survive the terrible strain of a long-term catestophic illness. We do better when we have company - so a big THANKS to Mitchell, Del, Katie, Kylie, Cassidy, Tammi, Bailey, Amanda and Talia!!
We are especially thankful to my mom, Betty, for coming up to spend a week with us. She is a joy to be around and helps all of us in so many ways. THANK YOU Grandma Betty - and Grandpa Don for letting her come!!
Benton wants to thank all of you that write in his guest book - he loves the messages! THANK YOU!!

Wednesday, December 31, 2003 10:44 PM CST

Benton is back in the hospital. We went to his regularly scheduled out-patient chemotherapy, only to find out that his new g-tube site is infected and his white blood count was down to zero. They admitted him on December 29th and began very strong antibiotics (so he was in the hospital for eight days, out for four days, and now has been back for three; we don't know how long he will have to be in the hospital). Benton's red blood count was also very low so he was given a red blood transfusion. Today he was able to walk around a little (he has to stay in an isolated area), but threw up three times. The doctors and nurses are very, very kind to Benton and he loves to walk around and give them candy.
Thanks to Grandma and Grandpa Regello, Shawna and Nicole, and Mrs. Harvey for coming to visit. Thanks to Debbie for spending the night on Tuesday so Bob and I could go out for our 12 year anniversary. And thank you to Aunt Vicki for coming to stay with Benton at the last minute (on New Year's Eve!!) because I feel like I am coming down with a cold (on no!). Bless you all and Happy New Year!!

Sunday, December 28, 2003 9:40 PM CST

Benton has not been vomiting as much - only about once a day. He is as weak as a kitten - he needs help going to the bathroom and has had several accidents. His hands tremble, but he is in good spirits (more emotional than normal, but usually happy). Bob and I are exhausted - the tube constantly overflows and so we wake up every hour or so.
We had a wonderful Christmas. Benton recieved so many terrific gifts. The day before Christmas, after returning from eight days in the hospital, we recieved many food items. Katie had organized frozen meals - our freezer was full!! THANKS Katie!! And then the Travis Harrell memorial group sent over food, presents for Benton , and gift cards. THANKS family and friends of Travis Harrell!! Bob and I sat down and cried at the generousity bestowed on Benton and us. Later, Aunt Vicki and Mike came over. Benton had a fabulous Christmas, thanks to so many of you - bless you!

Wednesday, December 24, 2003 10:18 PM CST

It is Christmas eve and we returned home earlier today. What we believed was going to be a four day stay, turned into eight long days. We are just exhausted.
Benton recieved his g-tube and seems to be doing well - he now has a GI doctor on board and she has adjusted his meds. It seems to be helping. He also received his chemo - it is never a pleasant experience.
We need to thank Debbie for staying two nights with Benton in the hospital - two difficult nights - one in which he was awake all night and the other when he was ill after chemo. THANKS Debbie! We also want to thank Aunt Vicki and Cousin Jake for staying a night each - Benton loves it when someone other than Mom or Dad stays with him - it's like a sleep over for him. This allows Bob to keep working (Jeanne had to take an unpaid leave long ago). THANKS Vicki and Jake! Many, many thanks to Katie for organizing a meal delivery for us - what a blessing to come home after eight days and have food in the freezer! THANKS Katie! Last, Aunt Vicki, Uncle Mike, and Becky will be coming to have Christmas dinner with us (Vicki is bringing the food!!). Benton was very worried that we would be all alone on Christmas day - so THANKS Vicki, Mike, and Becky!
We had very sad news when we came in the hospital - Colby Saiz lost his fight and died December 12 at the age of eight. We was very brave. We haven't told Benton yet. Benton's other friend, EZ (age six), will be leaving for San Fransisco to have a bone marrow transplant in January. We will be praying for him.
We wish you all a very Merry Christmas.

Wednesday, December 17, 2003 10:51 PM CST

Well, things are always changing around here. After two good days of little vomiting (although very little nutrition), it all broke lose on Monday. Benton vomited five times during the day (with nothing in his stomach). When we went to start the very slow drip in the night, he woke up three time in less than two hours, vomiting. We had to disconnect the feed after less than one can of PediaSure (200 calories for the whole day - and he only had 700 for the two previous days). Then, Benton proceeded to stay up the rest of the night, tossing, hearing things, and talking. We were very, very worried.
The next morning, Tuesday, Debbie and I took him for the surgery to insert the g-tube. It took an hour and 15 minutes. He vomited after surgery and retched most of the day. We had a very long meeting with his wonderful oncologist, and he will try some new strategies to improve Benton's weight and nutrition. Today he didn't retch or vomit once. He is very sore (they have to cut through some abdominal muscles) and has stayed in bed, but needs less moraphine. Also, the original plan was to begin chemo the next day, but now we are going to wait until at least Friday. This will give Benton some time to heal and begin feeds again before adding the chemo into the mix - we're thankful for the chance to Benton to heal some before beginning the cycle again. That means we won't be able to come home for at least four or five more days.
Thank you to Debbie for spending the night at the hospital with Benton - he loves it!! Thanks for all the phone calls, cards, and treats - you are so kind!!

Sunday, December 14, 2003 6:16 PM CST

Benton continues to vomit and retch - five times on Friday. We are trying something new - no daytime feeding through the n-g tube (doctor's advice - we've tried everything else). He didn't throw up once yesterday and only once so far today (but retches all the time - he's doing it now), however, he's not getting enough nutrition either. Bob and I are very tense and cranky - it doesn't help that we haven't had a full night's sleep in almost four weeks. The doctors think the problem may resolve itself when he has the surgery to insert the g-tube this Tuesday am. The very next day, Benton will receive chemo for three days. We hope to be home by Friday (I may not be able to update this site on Thursday). Bob has to work the day Benton has surgery, so Debbie is going with us. THANKS Debbie!!
Bob and I were very lucky to get out this Thursday night for my school's Christmas party at El Torito. My co-workers were so kind (they even bought us dinner!!) and it was wonderful not to talk about chemo and tumors for one night. THANKS Sierra View!! THANKS Aunt Vicki and Jake for kid sitting Benton - he had a great time!! Also, Benton's Boy Scout leader, Tammi, has been wonderful and kept us in the loop, so Benton was able to go and ring the Salvation Army bell in front of Target on Saturday. And three kids have come over to play with Benton -THANKS Nicole, Kylie, and Mitchell!!

Wednesday, December 10, 2003 9:44 PM CST

Benton started off the day well - but soon changed for the worse. He vomited four times today and retched many more times. His red blood count had also dropped significantly (to 8.3) since last Thursday. The doctor decided not to transfuse him, leaving him tired and cold.
He was very bored because he couldn't go for any walks today because of the rain. Jennie did come to visit today as did his Braille teacher, Heidi. They were a blessing. Yesterday we visited with Katie, Mitchell, Del, and Debbie. At first, Benton didn't have the energy to go, and once there, didn't want to leave.
On Monday at the oncolgist's office we saw Colby. He is eight years old. He was just so thin and tired and was crying. It made me cry. I want to help (shopping, cleaning, decorating, etc.) to make his last days more comfortable. Please pray for Colby and Benton - little guys shouldn't have to go through this.

Sunday, December 7, 2003 5:00 PM CST

Benton is feeling somewhat better. He narrowly avoided any transfusions (his hemoglobin went up to 9.1 and platlets to 50,000). This will be his best week because he is farthest out from the chemo in the hospital. He will have outpatient chemo tomorrow.
Benton continues to vomit daily. The feeding tube has ensured that he is receiving adaquate nutrition (he even gained 4 pounds), but he has no interest in food, chewing, or swallowing. He will have surgery to place a g-tube on December 16th.
Grandma and Grandpa Regello, Debbie, Aunt Val, and several young friends came to visit - he still loves company! We were able to get a tree and see Santa. Santa knows that he has been a very good boy!!

Wednesday, December 3, 2003 8:09 PM CST

Benton went to the Oncologist office on Monday for outpatient chemotheraphy (Vincristine) and a check-up. His blood counts showed that his hemoglobin (8.9 - normal is 11.0 - 17.5)and platelets (38,000 - normal is 150,000 to 400,000)are very low. The doctor said he should have a CBC (complete blood count) early on Thursday in case he needs another transfusion(s). Benton continues to vomit once or twice a day and generally doesn't feel that well - but he never complains and always asks about others.
A few kids ahve come over to "play" (Benton ususally lays on the sofa most of the time, but enjoys playing games). He is bored staying at home, but lacks the energy to go out. He does love recieving short phone calls, although he is difficult to understand because of the damage done by the radiation. Today he cried after talking to Grandma Betty because he misses her so much. Thank you to Grandma Betty, Debbie, and Katie who always cheer him up!!

Saturday, November 29, 2003 2:41 PM CST

In April, 2003, Benton was diagnoised with high-risk PNET. Already blind from an optic glioma when he was 15 months old, Benton has bravely faced surgery, whole head and spine radiation, and many rounds of very toxic chemotheraphy. This is his story of courage and spitit in the face of adversity.

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----End of History----


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